› Forums › General Melanoma Community › What should I expect?
- This topic has 48 replies, 3 voices, and was last updated 9 years, 2 months ago by
Suzi.
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- February 27, 2016 at 10:28 pm
February 2016 had surgery to remove melanoma from my shoulder, was thought to be .3 but came back 1.05. 2 weeks later had 2 lymph nodes removed, got a phone call tuesday saying there was 50 cells in the Sentinel lymph node and the second was clear. Said I had Micro Metastatic Melanoma. Waiting for My first oncologist appt on March 3rd.
My surgeon said he did not think I needed anymore surgery. So do you think I will have to have treatment?
This has all happened so fast, the spot showed up in December, my dermatologist thought it was basil cell and was shocked it came back as melanoma. They have been showing the picture around and no one would think it is.
Any advice would be appreciated.
thanks,
Suzi
- Replies
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- February 27, 2016 at 11:41 pm
Hi Suzi,
So so sorry you are going through this. You've come to a great place full of support and knowledge. Your oncologist will go over options for you. Having found Mel in your lymph nodes makes you stage 3 (as long as your scans are all clear). I am stage 3b myself, 3 out of 4 lymph nodes for me had micro involvement. No doctors I met with suggested a full lymph node removal (I would have denied one anyway) but some people do get the lymph node removal. There are not as many options for us at Stage 3, but thankfully there are some better options than there used to be. One of those options is to do treatment and the newest available treatment for our stage is Yervoy (ipi). I chose that path and have completed the biggest part of treatment with mild side effects. The other option my oncologist gave me was watch and wait. With that you'd get regular check ups, some scans for a while to make sure everything is staying clear and you'd watch for any new moles or changing moles. There is no right answer. Every choice from now on is going to be very personal and you will know in your gut what is best for you. It's good to do research and get a melanoma specialist (if one is available near you). One big piece of advice I can give is DO NOT read online statistics for survival. There are no updated survival rates available since all of the treatments out there are so new. Try to take some time to breathe and do as much as you can not to let this overtake you with anxiety. It's not easy, we all know, which is why it is so great to have a place like this to come to.
Best wishes,
Jenn
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- February 27, 2016 at 11:41 pm
Hi Suzi,
So so sorry you are going through this. You've come to a great place full of support and knowledge. Your oncologist will go over options for you. Having found Mel in your lymph nodes makes you stage 3 (as long as your scans are all clear). I am stage 3b myself, 3 out of 4 lymph nodes for me had micro involvement. No doctors I met with suggested a full lymph node removal (I would have denied one anyway) but some people do get the lymph node removal. There are not as many options for us at Stage 3, but thankfully there are some better options than there used to be. One of those options is to do treatment and the newest available treatment for our stage is Yervoy (ipi). I chose that path and have completed the biggest part of treatment with mild side effects. The other option my oncologist gave me was watch and wait. With that you'd get regular check ups, some scans for a while to make sure everything is staying clear and you'd watch for any new moles or changing moles. There is no right answer. Every choice from now on is going to be very personal and you will know in your gut what is best for you. It's good to do research and get a melanoma specialist (if one is available near you). One big piece of advice I can give is DO NOT read online statistics for survival. There are no updated survival rates available since all of the treatments out there are so new. Try to take some time to breathe and do as much as you can not to let this overtake you with anxiety. It's not easy, we all know, which is why it is so great to have a place like this to come to.
Best wishes,
Jenn
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- February 28, 2016 at 2:12 am
Hi Jenn, thanks for your response.
I thought I had stage 2, but that’s why I’m here to educate myself.
I do not really have any moles, mine was a dime sized flat sore that did not heal. I noticed blood on my bra strap early December. My oncologist is a melanoma specialist. I live in south Florida and there are many specialists here.
I get my stiches out on Monday, so much pain in my armpit, can’t wait till this heals.
Suzi -
- February 28, 2016 at 2:12 am
Hi Jenn, thanks for your response.
I thought I had stage 2, but that’s why I’m here to educate myself.
I do not really have any moles, mine was a dime sized flat sore that did not heal. I noticed blood on my bra strap early December. My oncologist is a melanoma specialist. I live in south Florida and there are many specialists here.
I get my stiches out on Monday, so much pain in my armpit, can’t wait till this heals.
Suzi -
- February 28, 2016 at 3:00 am
Staging can get confusing, when it spreads to lymph nodes it jumps into stage 3.
This might help explain the staging a bit for you: https://www.melanoma.org/understand-melanoma/diagnosing-melanoma/stages-of-diagnosis
And this site goes a little more into detail for staging: http://www.cancer.org/cancer/skincancer-melanoma/detailedguide/melanoma-skin-cancer-staging
I'm sure your onc will explain it as well. Glad to hear it is a melanoma specialist. There are so many ways that melanoma can show up, some get the typical looking melanoma mole and others get something totally different. It's good you noticed it and you've gotten it off. The healing part isn't fun, but each day should get a little better with that. Hope it heals up soon for you!
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- February 28, 2016 at 3:00 am
Staging can get confusing, when it spreads to lymph nodes it jumps into stage 3.
This might help explain the staging a bit for you: https://www.melanoma.org/understand-melanoma/diagnosing-melanoma/stages-of-diagnosis
And this site goes a little more into detail for staging: http://www.cancer.org/cancer/skincancer-melanoma/detailedguide/melanoma-skin-cancer-staging
I'm sure your onc will explain it as well. Glad to hear it is a melanoma specialist. There are so many ways that melanoma can show up, some get the typical looking melanoma mole and others get something totally different. It's good you noticed it and you've gotten it off. The healing part isn't fun, but each day should get a little better with that. Hope it heals up soon for you!
-
- February 28, 2016 at 12:03 pm
Wow that’s a lot to figure out.
The only thing is in the phone conversation with my surgeon he said there were no cells seen with the microscope but after something was injected 50 cells showed up. I have not seen the report yet I should get it tomorrow. -
- February 28, 2016 at 12:03 pm
Wow that’s a lot to figure out.
The only thing is in the phone conversation with my surgeon he said there were no cells seen with the microscope but after something was injected 50 cells showed up. I have not seen the report yet I should get it tomorrow. -
- February 28, 2016 at 6:28 pm
Sounds like they had to use a dye to see the cells. Any spread to lymph nodes means stage 3.. in your case I believe stage 3A would be the right one. I always try and find a positive in any situation… so for yours it is good that they were microscopic and only in 1 lymph node. I know it's kind of all confusing and lot of info, try not to get to overwhelmed by it all.
🙂
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- February 28, 2016 at 6:28 pm
Sounds like they had to use a dye to see the cells. Any spread to lymph nodes means stage 3.. in your case I believe stage 3A would be the right one. I always try and find a positive in any situation… so for yours it is good that they were microscopic and only in 1 lymph node. I know it's kind of all confusing and lot of info, try not to get to overwhelmed by it all.
🙂
-
- February 28, 2016 at 6:28 pm
Sounds like they had to use a dye to see the cells. Any spread to lymph nodes means stage 3.. in your case I believe stage 3A would be the right one. I always try and find a positive in any situation… so for yours it is good that they were microscopic and only in 1 lymph node. I know it's kind of all confusing and lot of info, try not to get to overwhelmed by it all.
🙂
-
- February 28, 2016 at 12:03 pm
Wow that’s a lot to figure out.
The only thing is in the phone conversation with my surgeon he said there were no cells seen with the microscope but after something was injected 50 cells showed up. I have not seen the report yet I should get it tomorrow. -
- February 28, 2016 at 3:00 am
Staging can get confusing, when it spreads to lymph nodes it jumps into stage 3.
This might help explain the staging a bit for you: https://www.melanoma.org/understand-melanoma/diagnosing-melanoma/stages-of-diagnosis
And this site goes a little more into detail for staging: http://www.cancer.org/cancer/skincancer-melanoma/detailedguide/melanoma-skin-cancer-staging
I'm sure your onc will explain it as well. Glad to hear it is a melanoma specialist. There are so many ways that melanoma can show up, some get the typical looking melanoma mole and others get something totally different. It's good you noticed it and you've gotten it off. The healing part isn't fun, but each day should get a little better with that. Hope it heals up soon for you!
-
- February 28, 2016 at 2:12 am
Hi Jenn, thanks for your response.
I thought I had stage 2, but that’s why I’m here to educate myself.
I do not really have any moles, mine was a dime sized flat sore that did not heal. I noticed blood on my bra strap early December. My oncologist is a melanoma specialist. I live in south Florida and there are many specialists here.
I get my stiches out on Monday, so much pain in my armpit, can’t wait till this heals.
Suzi
-
- February 27, 2016 at 11:41 pm
Hi Suzi,
So so sorry you are going through this. You've come to a great place full of support and knowledge. Your oncologist will go over options for you. Having found Mel in your lymph nodes makes you stage 3 (as long as your scans are all clear). I am stage 3b myself, 3 out of 4 lymph nodes for me had micro involvement. No doctors I met with suggested a full lymph node removal (I would have denied one anyway) but some people do get the lymph node removal. There are not as many options for us at Stage 3, but thankfully there are some better options than there used to be. One of those options is to do treatment and the newest available treatment for our stage is Yervoy (ipi). I chose that path and have completed the biggest part of treatment with mild side effects. The other option my oncologist gave me was watch and wait. With that you'd get regular check ups, some scans for a while to make sure everything is staying clear and you'd watch for any new moles or changing moles. There is no right answer. Every choice from now on is going to be very personal and you will know in your gut what is best for you. It's good to do research and get a melanoma specialist (if one is available near you). One big piece of advice I can give is DO NOT read online statistics for survival. There are no updated survival rates available since all of the treatments out there are so new. Try to take some time to breathe and do as much as you can not to let this overtake you with anxiety. It's not easy, we all know, which is why it is so great to have a place like this to come to.
Best wishes,
Jenn
-
- February 29, 2016 at 7:52 pm
Your situation is similar to my husband. In Mar 2014 he had a pimple like growth removed from his right shoulder. The dermatologist did not suspect melanoma and either did we. But, the pathology exam came back and it was melanoma. The staging is confusing because at first we were told that he had Stage 4 then later we were told it was Stage 3. The following April he had the melanoma on his right shoulder removed and the surgical oncologist also removed 2 lymph nodes. Since we were told that melanoma can be aggressive my husband wanted the most aggressive treatment posssible. His Onc at the time suggested radiation therapy around his right shoulder and bio-chemotherapy. So from Jun-Sep 2014 he endured weeks of radition and was hospitalized on and off 3 months for the bio-chemo treatment. I wish I can say he came out of it 100% the same but that was not the case. He suffered radiation therapy damage to his nerve on his right shoulder and does not have full function of his right arm, and we believe the radiation has permanently damaged his nerve that controls his shoulder blades. He was in remission up to Oct-2015, and I don't know how much the bio-chemotherapy had to do with this but things were okay up to this point.
In Oct 2015, his petscan showed mets in his liver, and right shoulder, and lower back. He now has stage 4 and is on immunotherapy treatment of Yerovoy/Nivolumab. After four rounds of infusion his most current petscan shows no evidence of disease (NED). There are many side effects to these drugs but we are happy that he is in remission again. He has to continue the treament for an indefinte amount of time but he doesn;t have to be hospitalized. He goes to the hospital for his infusion and returns home. It's been a learning and difficult journey at times, and I wish I found this forum sooner. My advice to you is to learn and get as much information as you can. I find this forum helpful and educational. If we had to do it over again I don't think my husband would have had the radiaiton therapy. Radition in his case does not improve his survival rate and it did more damage to him than good.
Best wishes to you!
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- March 1, 2016 at 3:07 am
Thanks for sharing EMI
I know all to well about the radiation, my dad has basil cell in his collar bone has had 2 operations and radiation and it has come back wicked he had the chemo pill twice and now is doing hyperbaric sessions. His skin is wasted from radiation.
I’m very nervous about my first oncologist appt. The surgeon removed my stiches today and said it will probably be recommended that I get the rest of my lymph nodes removed, he does not recommend it…don’t want to go though that again unless there us a good reason. I will go for a second opinion and hopefully they will suggest a pet scan?
Suzi -
- March 1, 2016 at 3:07 am
Thanks for sharing EMI
I know all to well about the radiation, my dad has basil cell in his collar bone has had 2 operations and radiation and it has come back wicked he had the chemo pill twice and now is doing hyperbaric sessions. His skin is wasted from radiation.
I’m very nervous about my first oncologist appt. The surgeon removed my stiches today and said it will probably be recommended that I get the rest of my lymph nodes removed, he does not recommend it…don’t want to go though that again unless there us a good reason. I will go for a second opinion and hopefully they will suggest a pet scan?
Suzi -
- March 1, 2016 at 3:25 am
If you have not had a PET scan yet, the oncologist will most definitley order one. They have to scan to make sure it has not spread beyond your lymph nodes. I had a full body PET scan and brain MRI a couple weeks after surgery to check for any mets, thankfully it was clear. My second PET is next week.. been 4 months since my first scan. Some doctors recommend the removal of all lymph nodes and others don't. It is very invasive, and for myself personally I did not want to go through all that just to find out the rest of them were clean. You'll have lots of new knowledge to go over with your oncologist this week 🙂
-
- March 1, 2016 at 3:25 am
If you have not had a PET scan yet, the oncologist will most definitley order one. They have to scan to make sure it has not spread beyond your lymph nodes. I had a full body PET scan and brain MRI a couple weeks after surgery to check for any mets, thankfully it was clear. My second PET is next week.. been 4 months since my first scan. Some doctors recommend the removal of all lymph nodes and others don't. It is very invasive, and for myself personally I did not want to go through all that just to find out the rest of them were clean. You'll have lots of new knowledge to go over with your oncologist this week 🙂
-
- March 1, 2016 at 3:25 am
If you have not had a PET scan yet, the oncologist will most definitley order one. They have to scan to make sure it has not spread beyond your lymph nodes. I had a full body PET scan and brain MRI a couple weeks after surgery to check for any mets, thankfully it was clear. My second PET is next week.. been 4 months since my first scan. Some doctors recommend the removal of all lymph nodes and others don't. It is very invasive, and for myself personally I did not want to go through all that just to find out the rest of them were clean. You'll have lots of new knowledge to go over with your oncologist this week 🙂
-
- March 1, 2016 at 4:19 pm
I have to agree that the radiation therapy experience for us was not good. After, my husband had the pimple like growth and lymph nodes removed he had no other evidence of disease. At this point, the Onc told my husband he could do nothing and wait and see if the cancer grows back, or do adjuvant therapy (treatment for high risk patient with no evidence of diseases). Again, based on the information we had my husband decided for the adjuvant therapy, which was the bio-chemotherapy and radiation. However, we had learned about Yerovoy at this time, but since he was Stage 3 his insurance company at that time did not cover this treatment. As a result, he ended up down the bio-chemo and radiation path.
As I mentioned he was in remission for about 1.5 years but the cancer came back in Oct 15. He has a new Onc and is on this ipi/nivo combo that seems to be working for him, and is now in remission again. He has to deal with all the side effects but it was not has bad as bio-chemo. It's been a journey of headaches and frustrations and I can understand your nervousness, but hopefully the information you are finding here is helpful. I've been reading other people's post and stories and it helps to know that you we are not alone. I wish you the best of luck with your Onc appointment.
-
- March 1, 2016 at 4:19 pm
I have to agree that the radiation therapy experience for us was not good. After, my husband had the pimple like growth and lymph nodes removed he had no other evidence of disease. At this point, the Onc told my husband he could do nothing and wait and see if the cancer grows back, or do adjuvant therapy (treatment for high risk patient with no evidence of diseases). Again, based on the information we had my husband decided for the adjuvant therapy, which was the bio-chemotherapy and radiation. However, we had learned about Yerovoy at this time, but since he was Stage 3 his insurance company at that time did not cover this treatment. As a result, he ended up down the bio-chemo and radiation path.
As I mentioned he was in remission for about 1.5 years but the cancer came back in Oct 15. He has a new Onc and is on this ipi/nivo combo that seems to be working for him, and is now in remission again. He has to deal with all the side effects but it was not has bad as bio-chemo. It's been a journey of headaches and frustrations and I can understand your nervousness, but hopefully the information you are finding here is helpful. I've been reading other people's post and stories and it helps to know that you we are not alone. I wish you the best of luck with your Onc appointment.
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- March 4, 2016 at 12:11 am
Sounds like a great plan. I wish all the best for you Suzi!
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- March 4, 2016 at 12:11 am
Sounds like a great plan. I wish all the best for you Suzi!
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- March 4, 2016 at 12:11 am
Sounds like a great plan. I wish all the best for you Suzi!
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- March 1, 2016 at 4:19 pm
I have to agree that the radiation therapy experience for us was not good. After, my husband had the pimple like growth and lymph nodes removed he had no other evidence of disease. At this point, the Onc told my husband he could do nothing and wait and see if the cancer grows back, or do adjuvant therapy (treatment for high risk patient with no evidence of diseases). Again, based on the information we had my husband decided for the adjuvant therapy, which was the bio-chemotherapy and radiation. However, we had learned about Yerovoy at this time, but since he was Stage 3 his insurance company at that time did not cover this treatment. As a result, he ended up down the bio-chemo and radiation path.
As I mentioned he was in remission for about 1.5 years but the cancer came back in Oct 15. He has a new Onc and is on this ipi/nivo combo that seems to be working for him, and is now in remission again. He has to deal with all the side effects but it was not has bad as bio-chemo. It's been a journey of headaches and frustrations and I can understand your nervousness, but hopefully the information you are finding here is helpful. I've been reading other people's post and stories and it helps to know that you we are not alone. I wish you the best of luck with your Onc appointment.
-
- March 1, 2016 at 3:07 am
Thanks for sharing EMI
I know all to well about the radiation, my dad has basil cell in his collar bone has had 2 operations and radiation and it has come back wicked he had the chemo pill twice and now is doing hyperbaric sessions. His skin is wasted from radiation.
I’m very nervous about my first oncologist appt. The surgeon removed my stiches today and said it will probably be recommended that I get the rest of my lymph nodes removed, he does not recommend it…don’t want to go though that again unless there us a good reason. I will go for a second opinion and hopefully they will suggest a pet scan?
Suzi
-
- February 29, 2016 at 7:52 pm
Your situation is similar to my husband. In Mar 2014 he had a pimple like growth removed from his right shoulder. The dermatologist did not suspect melanoma and either did we. But, the pathology exam came back and it was melanoma. The staging is confusing because at first we were told that he had Stage 4 then later we were told it was Stage 3. The following April he had the melanoma on his right shoulder removed and the surgical oncologist also removed 2 lymph nodes. Since we were told that melanoma can be aggressive my husband wanted the most aggressive treatment posssible. His Onc at the time suggested radiation therapy around his right shoulder and bio-chemotherapy. So from Jun-Sep 2014 he endured weeks of radition and was hospitalized on and off 3 months for the bio-chemo treatment. I wish I can say he came out of it 100% the same but that was not the case. He suffered radiation therapy damage to his nerve on his right shoulder and does not have full function of his right arm, and we believe the radiation has permanently damaged his nerve that controls his shoulder blades. He was in remission up to Oct-2015, and I don't know how much the bio-chemotherapy had to do with this but things were okay up to this point.
In Oct 2015, his petscan showed mets in his liver, and right shoulder, and lower back. He now has stage 4 and is on immunotherapy treatment of Yerovoy/Nivolumab. After four rounds of infusion his most current petscan shows no evidence of disease (NED). There are many side effects to these drugs but we are happy that he is in remission again. He has to continue the treament for an indefinte amount of time but he doesn;t have to be hospitalized. He goes to the hospital for his infusion and returns home. It's been a learning and difficult journey at times, and I wish I found this forum sooner. My advice to you is to learn and get as much information as you can. I find this forum helpful and educational. If we had to do it over again I don't think my husband would have had the radiaiton therapy. Radition in his case does not improve his survival rate and it did more damage to him than good.
Best wishes to you!
-
- February 29, 2016 at 7:52 pm
Your situation is similar to my husband. In Mar 2014 he had a pimple like growth removed from his right shoulder. The dermatologist did not suspect melanoma and either did we. But, the pathology exam came back and it was melanoma. The staging is confusing because at first we were told that he had Stage 4 then later we were told it was Stage 3. The following April he had the melanoma on his right shoulder removed and the surgical oncologist also removed 2 lymph nodes. Since we were told that melanoma can be aggressive my husband wanted the most aggressive treatment posssible. His Onc at the time suggested radiation therapy around his right shoulder and bio-chemotherapy. So from Jun-Sep 2014 he endured weeks of radition and was hospitalized on and off 3 months for the bio-chemo treatment. I wish I can say he came out of it 100% the same but that was not the case. He suffered radiation therapy damage to his nerve on his right shoulder and does not have full function of his right arm, and we believe the radiation has permanently damaged his nerve that controls his shoulder blades. He was in remission up to Oct-2015, and I don't know how much the bio-chemotherapy had to do with this but things were okay up to this point.
In Oct 2015, his petscan showed mets in his liver, and right shoulder, and lower back. He now has stage 4 and is on immunotherapy treatment of Yerovoy/Nivolumab. After four rounds of infusion his most current petscan shows no evidence of disease (NED). There are many side effects to these drugs but we are happy that he is in remission again. He has to continue the treament for an indefinte amount of time but he doesn;t have to be hospitalized. He goes to the hospital for his infusion and returns home. It's been a learning and difficult journey at times, and I wish I found this forum sooner. My advice to you is to learn and get as much information as you can. I find this forum helpful and educational. If we had to do it over again I don't think my husband would have had the radiaiton therapy. Radition in his case does not improve his survival rate and it did more damage to him than good.
Best wishes to you!
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